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Thursday, February 25, 2010

Well Dominick had his first evaluation today at Cranial Technologies. He definitely needs the DOC Band. The evaluation went pretty well and I am feeling a lot better about this. I was having a very hard time excepting the fact that my son needed to wear a helmet. I have known since he was 2 months old that this could be a possibility due to torticollis. I just figured that it would fix itself and there was no way my son would have to wear it. Well another month would go by and it wasn't getting better but I just kept thinking it will get better. I started putting Dominick to sleep on his tummy because I figured the more time he had off the back of his head it would get better (not to worry he was already rolling over). NOPE!!! We went into the pediatrician because of a tummy problem and Dr. Flicker recommended we see Dr. Garri and Dr. Flicker seemed pretty concerned about the flat spot. I still felt like once Dr. Garri saw him he would say that it wasn't that serious and it will fix itself. Wrong again! Dr. Garri felt that it was a pretty severe case and sent us to Cranial Technologies. I was still holding out hope that they would say Dominick was perfect (which he is but he will be even more perfect after the helmet). Wrong yet again! It was all starting to really hit me yesterday and I just could not stop crying thinking about my poor baby being in a helmet. I kept thinking it would be like when I got braces and they tell you "oh you will have them on for a year and half" but then in reality it was like 3 years. The helmet is a big commitment. Dominick will have to wear it everyday for 23 hours out of the day. The only break he gets is for bath time and we have to clean it everyday during that one hour. Wow if I have to commit my family to this helmet for 2 years 23 hours out of a day I just don't think I can do it. Hello we live in Florida and love going to the pool or beach this means my kid cannot enjoy swimming or anything. I was also really struggling with the fact on how people will stare and react to the helmet. I know I shouldn't care what other people think but I DO. So now that the initial evaluation is over I am feeling a lot better. It went really well today. They have a very friendly staff and explained the process very thoroughly. Today they took pictures and measurements to make sure Dominick medically needs the helmet. He does! Big time according to the numbers they got. I should be receiving a call from them within the next 24-48 hours to go over insurance, payment options and setting up the next appointment. They told me to expect his next appointment to be next week. That appointment will include a scan of Dominick's head to get precise measurements to do a molding and a fitting of the helmet. Dominick should be in the helmet within the next 2 weeks. Once we have the helmet we will be going every week for an adjustment. The process should be anywhere from 8 to 12 weeks. They told us they really like to go 12 weeks to get the best results. The inside of the helmet is made of foam and the outside is a plastic piece and at every weeks adjustment they shave a little bit of the foam off inside as his head starts to change in shape. They really like to keep the helmet on until the get all the foam shaved out and its just the plastic piece left. There is a slight possibility that Dominick will have to have 2 different helmet sessions (8-12 week ones which means possibly 24 weeks)because the shape of his head but they do believe that just one round will do the trick. Lets keep our fingers crossed for just one round! Now to the fun part. The helmet is an all white footbally looking thing and we can decorate the outside however we want. So I am really looking forward to doing that. I need to find some positive (besides the fact that my kids head will be normal)thing to look forward too. Mike and I have been discussing different ways to decorate and are debating between a Marlin's Baseball style or maybe a Nascar style. But once we decide and get the helmet we will definitely post pictures.

3 comments:

My son's name is also Dominic, minus the k! We live in South Florida too and go to Cranial Tech in Miami. They are absolutely wonderful there! Our clinician is Anne, and she is fantastic. My son has had incredible results so far with his DOC Bands. We started when he was 4 months and he's now 9 months (he was very severe). If you have any questions or just want to chat about heads and helmets, I have become an "expert" during these past 5 months lol. My email is danabrin@gmail.com.

Hi! Both my daughters had to have surgery for craniosynostosis and wear helmets. My one daughter is 4 and my other daughter is just 5 months old and is still in the helmet. She had her surgery in Feb. We are going on her 2nd helmet here and I decided to go with plain pink this time instead of choosing an already decorated one. How did you decorate yours? Can you use stickers?Chris B.

Chris: I wish I got to chose a helmet that was already decorated or at least painted. At first we had a muralist come out and paint the helmet but that didn't last too long. The paint doesn't really hold on plastic to well. So I peeled it off and applied a bunch of stickers to it. It was so much cheaper and I loved it. I applied several coats of Mod Podge over it to protect the stickers. If you want to change the stickers they recommend using a little bit of acidtone to remove the glue and just peel the stickers off and replace. Best of luck to you and your daughters. So sorry to hear that they had to go through the surgery. That must have been so difficult.